Meaningful involvement in research: learning alongside lived experience

Many researchers want to involve consumers and community in their work but aren’t always sure where to start or how to do this well.

Questions about power, trust, language, resourcing, and capacity can make engagement feel complex or intimidating, particularly when there is pressure to deliver outcomes quickly.

Across 2025, Health Voices Victoria partnered with the Deakin Institute for Health Transformation to explore these challenges together, delivering a training program focused on deepening IHT members’ collaboration with consumers and community in their research.

The four-part webinar series and in-person workshop was designed to support researchers to strengthen their practice by working alongside lived experience experts. A defining feature of the training program was that it centered collaboration with lived and living experience experts. This shaped not only the content, but also the tone and feel of the sessions, modelling the kind of respectful, relational engagement the program was inviting researchers to consider.

Across the webinars and workshop, a consistent theme emerged: meaningful involvement is relational work. It requires clarity, honesty, humility and care and it looks different depending on the people, context and purpose.

Learning together through conversation and reflection

Each webinar was co-facilitated by a lived experience expert alongside a Health Voices Victoria team member. This approach grounded discussions in real-world experience and helped bring engagement principles and frameworks to life.

As lived experience expert Tharindu Jayadeva reflected during the series:

“As someone who has leaned into my lived experience of navigating eating disorder services and public mental health systems to help design research projects, I know these engagement practices can be an embodied and empowering experience — for both consumer and researcher.”

This grounding helped shift conversations away from procedural approaches towards more relational ways of working, where trust, clarity and care are seen as central rather than secondary

Seeing engagement from a community perspective

The webinars focused on what engagement feels like from the perspective of people being involved because of their lived and living experience. Lived experience expert Kate May encouraged researchers to move beyond the technical ‘what’ of engagement and spend time with the ‘why’.

“It’s not just why researchers should engage with lived experience, but why someone with lived experience would or wouldn’t want to engage with research.”

This reframing supported honest conversations about clarity, limits and intention, and highlighted the importance of being transparent about what researchers can realistically offer communities, and how early, thoughtful engagement can shape more ethical and meaningful research partnerships.

Creating spaces that are ‘safe enough’

A key focus across the series was the need to create spaces where people feel safe enough to contribute meaningfully. Conversations explored trust, belonging, and the impact of power and identity in engagement spaces.

Reflecting on this, Tharindu shared:

“To be trusted to show up as I am, in ways that make me feel safe, feels purposeful and meaningful.”

These reflections resonated strongly with participating researchers, many of whom shared that the sessions helped build confidence and made engagement feel more possible, and less intimidating, by naming complexity rather than avoiding it.

From learning to practice: the in-person workshop

The webinar series was followed by an in-person workshop designed to help early- to mid-career researchers translate learning into practice. Researchers worked alongside lived experience experts and engagement facilitators to develop practical consumer and community engagement plans for their research.

The workshop prioritised dialogue and relationship-building over content delivery. A near one-to-one ratio of researchers and lived experience experts, thoughtful pre-briefing, and deliberate movement between groups helped create an environment where collaboration felt natural rather than performative.

One researcher shared:

“My confidence has increased. Community involvement has felt like a bit of a big scary unknown (particularly as my previous research experience has been solely in quantitative and secondary data analysis). The main aspect of the workshop that contributed to my increased confidence was meeting with all the different community members on each table. I now realise that it is possible for me to do this big scary thing!”

As one lived experience expert at the event reflected:

“There was something so special about demystifying community engagement by just being together as people in thoughtful, encouraging conversations focused on solutions and action.”

The workshop also created the foundations for relationships that extend beyond a single project or session.

Why this work matters

Together, the webinars and workshop created space for learning that was practical, reflective, and grounded in lived experience. Rather than prescribing a single way of working, the program supported researchers to build confidence, ask better questions, and think more carefully about how and why they engage.

One researcher identified the value of widening their perspective on the variety of ways community members can be involved throughout the research cycle:

“Being able to speak with consumers on all stages of our projects was valuable as I was able to more fully understand how and when consumers should be involved.”

Lived experience expert Jen Morris noted the value of researchers engaging openly with one another:

“It was wonderful to see so many researchers interested enough in consumer and community engagement to join the session and be part of the conversation. This gives me great hope for the future.”

Trang Vu co-facilitated a webinar on co-design. She reflected at the close of the series:

“It really felt like the beginning of a genuine shift in how researchers, co-designers and communities come together — building research from a place of partnership, not parallel effort.”

This work reflects Health Voices Victoria’s broader commitment to supporting meaningful, non-extractive engagement where communities are genuine partners, not just data sources. By slowing down, listening carefully and being genuinely guided by lived experience expertise, researchers can build work that is more grounded, inclusive and ultimately more impactful for researchers and communities alike.

Partner with us

If this approach to collaborative work resonates with you, we would love to hear from you. Whether you’re a researcher, a program manager, or someone working to embed better engagement practices across your organisation or institution, we’d love to talk. Feel free to reach out at healthvoicesvic@deakin.edu.au.